Monday, May 6, 2019

Is 70-percent Greater Than X?


Admittedly, I often struggle with math but the equation I was presented with today is bound to stump even the mathematical genius.

Essentially, I have to determine if 70-percent is greater than X.

Of course, nobody can accurately answer that question without more information. Unfortunately, that's pretty much all I have to go on after meeting today with Dr. Braughan, the transplant specialist at University Hospital's Seidman Cancer Center.

Paulette and I met with the doctor for what we thought was to go over my transplant options following treatment for my Mantle Cell Lymphoma relapse.

Dr. Friedman tried to warn us of the difficulty we'd face when we met with Dr. Braughan, but we weren't ready for it.

My options are limited unless we include some options I wouldn't consider. Let's first go over those.

I could let the disease run its course and see how long it takes to finish me off. This one isn't high on my list of choices.

Secondly, I could take the advice of the assistant at the Silver Lake Wellness Center who prescribed me with a Medical Marijuana card. She said, "Cannabis cures Cancer."

I could take my chances there, but again, that option isn't very appealing.

So, that leaves me with two viable--but equally sucky--options.

There's the Allogeneic transplant, which would require donor cells to be infused into my body after complete remission is secured through a regimen of chemotherapy, and there's the CAR-T cell therapy option, which is similar to a stem cell transplant but uses engineered T-cells introduced in my body to fight off the disease.

The Allogeneic transplant is very similar to the Autologous transplant 10 years ago. First, I'd go through a chemotherapy regimen to get into remission. Then, instead of collecting my own cells from my body, they'd use donor cells and introduce them into my blood.

There are a lot of complications with the Allogeneic transplant, which is why I was horrified to even consider this option once I learned my Cancer had returned. 

Following the Allogeneic transplant, which would require about a 30-day hospitalization, I'd spend the next 60-90 days at Hope Lodge in Cleveland where I'd be monitored and treated several times per week.

The real concern with the Allogeneic transplant is with Graft versus Host disease and all of the bad side effects it brings with it. Basically, that means my cells see the donor cells as "bad" cells and tries to fight them off. 

Doctors have gotten much better at dealing with GVH but the concern exists. Recovery can take a year to two years.

Dr. Braughn said about 70-percent of Allogeneic transplant recipients make it past the one-year mark. SEVENTY PERCENT.

CAR-T is a clinical trial, which leaves me with the unknown or X.

If we chose the CAR-T option, I'd have a short hospital stay at the end of May to collect the T-cells they'll manipulate in the lab. 

Once the cells are ready, about 12 days later, I'd go back to the hospital to have the cells infused. I'd be in the hospital for about two weeks. After that, I'd spend the next 60 days at Hope Lodge so I could be monitored and treated.

Like the Allogeneic transplant, CAR-T has its own set of side effects, including Cytokine Release Syndrome. 

Recovery can take several months or more.

Because CAR-T is a clinical trial, we don't have a lot of successes or failures to learn from. We don't how long of a remission I could experience.

At UH, they've conducted eight CAR-T cell therapy treatments and six of the eight responded positively. 

So, 70-percent or X, which is greater?

That's the equation I have to solve. 

The irony here is 10 years ago when I was first diagnosed, I was told I had Chronic Lymphocytic Leukemia. The treatment would be pretty mild and I wouldn't lose my hair! A week or so later, that diagnosis changed to MCL and my treatment became very aggressive, which included hair loss.

Last week, I had a much better outlook on how the treatment would proceed--and I wasn't going to lose my hair! Today, I get a big kick to the nuts and now I have to make an impossible decision.

Where do I start? How do I determine the right course of action? This isn't fair.

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